How the Foley's Know Sensory Processing Disorder is Real

My friend Emilie sent me a link to this post the other day. I hadn't heard that Sensory Processing Disorder was in question by psychiatrists, but apparently it is, and it's being called "sheer quackery". Well, psychiatrists are welcome to call it whatever they want, but the author of this post really hit the nail on the head for me. As I was reading, I started tearing up and I thought, "YES! YES! YES! She knows. She knows exactly what it's like." While Noah and her son don't have the exact same symptoms and experiences, they are pretty darn close.
So I've been thinking for days, how could I tell that Noah had a problem? How did I know that SPD was real for him? When my doctor in Utah kept saying "he'll grow out of it, he's okay" how did I know he was wrong? There are lots of ways. As I've gone back to read over old posts from when Noah was really little I feel so bad for that mom and that boy. It's constantly "I don't know how to calm him down" "I don't know what he needs" "I don't know why he's so upset all the time". Life with Noah has never been easy and I'd wager life is not easy for any parent. But this is how I knew SPD was real, and continues to be real, for Noah.

It was an inability to sleep with a diaper or pull-up starting around age 3, and thus wetting the bed/sheets every single night for two solid years. 

It was being unable to be strapped in a 5-point harness starting from birth without screaming. 

It was a 12-hour drive to California with Noah screaming the entire 12 hours without stopping or falling asleep. 

It was being unable to wear both pants and underwear at the same time, which soon became an inability to wear underwear at all. 

It was being unable to sit down at the dinner table, or sit down on his bottom at all. For 2 straight years. 

It was holding down my 6-year-old while he screams and kicks me as I try to put socks on before his baseball game, and having parents approach thinking I'm abusing him somehow. 

It was having to quit sports because he cannot bear the feeling of socks, even though he loves and is good at sports. It's also wearing crocs, even when it snows, because he can't wear enclosed shoes. 

It was his fascination with the feel of a hair tie around his arm and hand from the time he was a baby, just 6 or 8 months old (see pictures above). 

It is him putting the corner of his blanket in his ear and pressing as hard as he can to help calm himself. 

It is me forcing him to take a drink from a sippy cup because I know sucking is calming for him, even after he's outgrown sippy cups. 

It was him screaming bloody murder when I suggested we go get ice cream because it meant he would have to ride in the car (and thus a carseat). 

It was massive tantrums over nothing--literally nothing--that we couldn't stop. 

It was cutting tags out, or only buying tagless, of every single thing he owned. 

It's cutting out the netting on a swimming suit because he can't stand how it feels. 

It was worrying every single day that he wouldn't be able to go to school because he cannot sit down for an extended period of time. 

It is always ordering the pizza with no cheese on half because Noah can't stand the feel of melted cheese in his mouth.

It was being unable to get off the towel at the beach because the sand sticking to his body was too overwhelming. 

It was an overwhelming reaction to anything even remotely spicy. Like one shake of pepper. 

It was a face that was sore and bleeding for 6 months because he couldn't help but lick his face. (Which he still does but somehow his face has gotten used to the constant licking and he no longer has the sores on his face.) 

It was him hiding his face in the pictures all through first grade because he constantly got asked why his face was so gross. 

It was biting his fingernails until he bled. 

It was finding a "mouth tool" that he could take to school and not get made fun of for having a "baby chew toy" by classmates to help stop his face licking. 

It is him being unable to bear the feeling of his church clothes so he unbuttons and unzips his pants and pulls his arms into his shirt. 

It is never giving hair cuts until we absolutely have to because he can't stand the sound of the scissors on his hair, or the feel of the pieces falling off. 

It's never scratching your leg near him if you're wearing jeans because the sound sends him into a tailspin. 

It's sleeping on top of the comforter because if he touches anything too soft (like his sheets) he has to immediately touch something hard and he can't do that in his sleep.

It's the horror at the sight of blood to the point of throwing up and major tantrums. The terror of losing a tooth and the blood that accompanies it. 

It's buying shirts that are 6 sizes too big for him so he won't  have to feel the seams.   

It's eating steak as often as possible because it's something that he has to chew longer, and chewing is calming. 

It is the 4-hour weekly roundtrip and all expenses associated with Occupational Therapy.

It's never, ever, ever being comfortable. Ever.

As OT winds up for him I have a lot of tools to help. I'm more knowledgeable than I was before and much more sympathetic. I still get frustrated about things--especially on Sundays--but I know now that he's not doing it just to spite me. I seriously used to think that. I feel a lot of hope about where we are and what we can do for him, but there are also times that I feel hopeless. I feel like maybe he'll never get to live a normal life. Maybe he won't be able to go on a mission because the thought of him wearing a suit and tie every day (and garments) is laughable. Noah is a great kid. A REALLY great kid. I know people deal with a lot worse. But come spend a week with us, I'll show you what life is really like for him. It is not easy. But I can promise you it is real.